Today is the World Autism Awareness Day. Therefore there is no better day to explain how this condition affects our family and how we are trying to deal with it.
The story should really start when our son, aka Flower Sting was born. But obviously we did not know he is going to have this condition. It was when he was 4, and just started Primary School, he has been officially diagnosed with ASD (Autism Spectrum Disorder). However, beforehand I had some suspecting thoughts which Mr Sting consequently rejected. While our son attended the nursery I was trying to speak to the nursery staff, asking them questions, trying to suggest “Maybe he is autistic?”, but the usual answer was: “Noooo… He is just a bit eccentric!” or “Everybody is a little bit autistic”. Yeah, right… say that to the adult autistic person, they may not agree with you…
They have also commented few times the fact we speak Polish at home. In my eyes they probably just thought that our son can’t really speak English, that is why he isn’t talkative and is shy. That was not the case at all. We have not done anything different to what we have done to our daughter who has never had any problems with being bilingual. It was very frustrating time for me as a mum. I knew there is something not right with our son, but there seems to be only me who wanted to do something about it. I was during my nursing studies which required me working full time during my placements, apart from that I had to be mum for our two children. Probably that is why my uni grades were not great…
Grades were not the priority. After major act of negligence at the nursery, where the staff left my son in soiled pants whole morning, because he was just sitting quietly in the corner and did not know how to tell the staff that there is a poo in his pants, I have decided to contact whoever I could in order to have him checked for anything really. I have managed to get appointment with Speech Therapist, and after 5 month of being on the waiting list our son could be finally checked by somebody competent. From that appointment things started to slowly happen. But things in NHS system does not happen very quickly. The services are over-stretched, under-staffed and not funded adequately. that is probably topic for another post which perhaps Mr Sting would like to comment on. Anyway… Eventually, when our son started Primary School in September 2017 we received diagnosis, Autism.
Having this diagnosis broke our hearts. Even though I knew there was big possibility that our son may be autistic, still, I felt like somebody ripped my heart to peaces. I thought I will never feel calm about the future of our children. It is very hard to explain. It was just extremely hard situation. Mr Sting cried, he was absolutely devastated. I thought he will never be happy again. Seeing him so upset also broke my heart even more. But I could not just leave it as it is. The school helped a lot. From day one, I had the impression that the staff is experienced with children with special needs, this helped me to feel more confident. The teachers were and still are wonderful. But the fight with the system has only just began. While we felt confident about the school we wanted to somebody to tell us what to do with our Flower at home. The Local Offer by council was there but offering mostly information sessions, some sessions for parents of how to potty train autistic child or how to help them to fall asleep. Both not applicable for us. Some other interesting sessions were held quite a distance from us and not at suitable times. So, after hours of internet search I have finally came across the charity Child Autism UK which delivers ABA therapy to autistic people. Again, this is probably topic for another post.
Now, Flower Sting is 5, soon to be 6. We are doing the ABA therapy for a year now. The life is difficult but who does not have difficult life? We are accepting it as it is. Mindfulness helps a lot. We are still happy with care he is receiving at school. Our son has progressed incredibly. Overall, Autism changed our life. We did not wanted this diagnosis, but it may as well be a blessing in disguise, as Mr Sting often says. It is easier to deal with the problem if you have identified. We know what the problem is, we have knowledgeable and experienced people around us, we do not feel alone. Yes, it took quite an effort to find these people. Yes, it took quite a battle to be at this point. And I guess this battle will never end. Yet, we are happy family now. Piece of me would prefer my son not to be autistic. Would he be the same person? Would I be the same person then? Would our family be the same? We love our Flower as he is now. Here and now. We love our life now! There is no point to fantasise “what if…” as it will not change anything and will help with nothing! We are no where near perfection, we have our ups and downs, we swear a lot, we make mistakes. Just like everyone else.
I feel like this post has to have some sort of important finishing point. I have never been good writer, which you can tell by looking at my university grades… So I think I leave it just like that.